Adam it is my friend Sandra Trotta on the 23rd at Morton Plant Hospital in clearwater Fl. They have it listed as Peter Duplin Adam I would really like to get Sandra name on the list but because I have been keeping and helping her with the journal they used my name.Adam could you please help me with this as it is so important thankyou PeterDuplin.

Adam I want to personally thank you for creating this incredible site.As a friend of someone who is having OHS for the second time I found this incredible site where I can be accepted and vent my feeling my downfalls and my frustrations, and also have this incredible wealth of information at my finger tips thank you Adam. You have truly put your heart and sole in to creating this priceless website. Warm regards Sandra and Peter

Adam Pick Hey Peter, Wow. Thanks. You just made my day, my month, my year! It is so nice to wake up to a message like this.

That said, there really is no need to thank me. In fact, it is I who should be thanking you and the other wonderful members of this community.

It is a complete honor and privilege for me to be of service to this special community. I can't begin to express the joy this project has brought into my life. So... Thank you!!!!!!

Now, let's focus on getting Sandra ready for a successful surgery and recovery! If you or Sandra need anything, please let me know.

Keep on tickin!
Adam

Peter Duplin Adam thank you for your kind words and "Lets go getting attitude "Sandra and I will definitely let you know if Sandra and I need any assistance in the days ... Read more

Peter Duplin Adam thank you for your kind words and "Lets go getting attitude "Sandra and I will definitely let you know if Sandra and I need any assistance in the days upcoming before her surgery.God Bless Sandra anPeter

On February 6, 2015...

Hi Adam,

I hope all is well with you and your family.

I have two questions.

First, I would love to have the link to the commercial when you are ready to share. I would like to share it with my family for sure.
Second, do you have any posts from people who have suffered from pericarditis? At 5 months, go figure, I feel great, no fatigue, no pain, no swelling, but I still feel my heart sticking to my breast bone at every single breath. I had a CT scan done recently and Dr. Stewart looked at it, and my cardiologist is going to see it next week along with a chest x-ray, and an echo was done. Nothing is concerning anyone at this point, except me, although my cardiologist has not seen the images. Prior to this he reviewed the echo and I had to push for some help or a solution. Everything I read says it goes away after 3 months, (cleveland clinic included) but I am worrying about why the inflammation is still there, what can it cause, if anything long term, and why am I feeling the same exact way, at 5 months. I feel like no one has this, but me, which probably is not true. My cardiologist wants to give me a lot of ibuprofin, which I am not taking, and I found something else that is an entirely different approach (holistic - and backed up by a lot of research) to combat inflammation in general, and is used in place of ibuprofin, without any of those nasty side effects. It is being shipped and I will have it next week to take. I noticed you listed posts on lack of sleep and was wondering if you have any for what I am feeling. Thank you. (can you tell I am at the end of my rope with this)?

Adam Pick Hi Christine, Great to hear from you. I hope and your daughters are enjoying your new home. Regarding the video, it is in final review. I'll get you a link ... Read more

Adam Pick Hi Christine, Great to hear from you. I hope and your daughters are enjoying your new home. Regarding the video, it is in final review. I'll get you a link as soon as it is available. Sorry for the delay.

I just received a very interesting question from Bernie about the pericardium and heart valve surgery. Bernie writes, "Hi Adam - At 51 years old, I need to r

Thanks, Adam. Chases comment is probably who I identify with the most.... I see ibuprofen knocked it right out, which it is suppose to.
Please no apologies ... Read more

Thanks, Adam. Chases comment is probably who I identify with the most.... I see ibuprofen knocked it right out, which it is suppose to.
Please no apologies needed for the time of the release for the commercial. ( I would secretly love to bring it my cardiologist who never shared the repair option with me). Famous last words.... Christine, you will just have to live with a mechanical valve and take cumiden and adjust to your new life. Really? I don't think so. 😊

Thanks for the warm welcome Adam, yes I guess we are neighbors . Glad I found your site, what a wonderful support system. I may take you up on answering some questions should they arise. I was to see the surgeon yesterday for q&a and scheduling but he had emergency surgery, so I guess it'll wait a week.

Hi Adam...I see a few great hospital's and doctors mentioned on here. I just wanted to say that my surgeon Dr. Michael Acker from HUP in Philadelphia is amazing. He saved my life. My mitral valve was open only the size of a pinhead and I had a mural like clot on my left atrium. My 2nd surgery was at Cleveland Clinic and they were great too. They did not take my insurance this time around. I was on borrrowed time and went with HUP after going in the ER on 12/18/14. I am happy I did and just want others to know that there are great hospitals that are local. Some may be to ill to travel, no money or insurance issues to go to the best. HUP is #7 in the US for the heart. The nursing care at HUP is the best I have ever seen. I don't know if you know of Dr. Michael Acker, but I wanted to share that with you in case someone can't travel out of PA or the local area surrounding it.

Tammi Gunwall I'd like to add Dr Robert Saeid Farivar in MN as well. He did a fabulous job with my BAV replacement and has an amazing and extensive background. He was/is ... Read more

Tammi Gunwall I'd like to add Dr Robert Saeid Farivar in MN as well. He did a fabulous job with my BAV replacement and has an amazing and extensive background. He was/is very attentive and follows his patients closely after surgery. He took the time to really listen to my questions & concerns and made me feel very confident in my choices. My incision scar could not look more amazing either...literally flawless. Being a woman, I am pleased to say that it is barely even visible (even at just 4 wks post op). I'm sure you have a criteria for your list of recommended surgeons Adam, but I had to at least give props to Dr Farivar and his tremendous work. :)

Dear Adam,
I just wanted to send a quick note of thanks for both your book and this site. As I approach my surgery in two days, it is frightening to think of how lost I would feel without the information you have provided, and the support that this community freely gives. Don't get me wrong...I'm still nervous, but it would be foolish not to be. But at least I'm walking into this experience with realistic expectations instead of unrealistic fears. For that, I thank you deeply.

PS: When I met my surgeon at U of M for the first time and asked what I could do to get prepared for surgery, the first thing he mentioned was to read your book (which I had already done!). Now that's a ringing endorsement.

As for being nervous, I don't know many people who are not nervous before any surgery -- let alone heart surgery. The good news is that you are ready. You know what to expect and... we're here to help you and your family. :)

Hey Adam. Have another bug for you for this site: Appears anytime someone comments on a story (i.e. profile update), it shows it in everyone's notifications... (Sorry can't help but to point it out, work in the Software/Cloud industry - and really want this site to be as good as possible).

Adam Pick Hi Ole, Thanks for the heads up. I'm not sure I understand though. The way the system works is that when a patient joins a thread (e.g. a journal, a guestbook, ... Read more

Adam Pick Hi Ole, Thanks for the heads up. I'm not sure I understand though. The way the system works is that when a patient joins a thread (e.g. a journal, a guestbook, a photo, etc.), they are notified when an additional patient provides a comment to that thread.

That way, each patient can stay connected to the conversation as it evolves. Often times, we're seeing patients go back-and-forth with each other on a thread.

The notification system was designed to facilitate that communication. Is this what you are talking about?

Jennifer Anderson Love this site! However, I did notice that I get notifications saying "Jane Doe commented on your profile update"... and when you click on it, it's actually ... Read more

Jennifer Anderson Love this site! However, I did notice that I get notifications saying "Jane Doe commented on your profile update"... and when you click on it, it's actually someone else's profile update. No complaints at all, just trying to give an example of what I think Ole was trying to say.

Adam Pick Hi Jennifer, Thanks. Is that error happening just for the profile updates notifications?

Ole Bore It appears so. And only if someone comments on the profile update. It will say "Adam commented on your profile update"

Hello Adam,
Received a note from Robin Szymanski who Is celebrating her 2nd.yr. Anniversary of
her surgery today back in the Hospital and thought I would mention it to you as I already noted it in the updates in my journal today as She sent the message out that prayers would be appreciated by her! Thought I would mention it to you as I have the rest of the community as I am sure a word from you would go along way while they are checking her out and running their tests. Thank you for your time. Terrie

Hi Adam, I just read your response to Damian and I'm wondering how both your pulmonary and replacement valve are doing 9 yrs later? Is your pulmonary functioning at normal capacity in the aortic position? Do you ever feel and side effects? Thanks for any insight:)

Last night, I drove up to my house after a very, very, very lonnnnnng day of work. The past twelve hours were filled with hundreds of emails, several conference

Amy DiGiovanni Noack Thanks Adam! That's so reassuring to hear. I'm hoping I have the same outcome and longevity with my new quilted heart!...I picture a bunch of patch work when ... Read more

Amy DiGiovanni Noack Thanks Adam! That's so reassuring to hear. I'm hoping I have the same outcome and longevity with my new quilted heart!...I picture a bunch of patch work when I see the diagrams and it makes me think of a quilted blanket!!
My best to you!

Edith Dim Adam...I use listened to your video with Dr. Gillonov of of the Cleveland Clinic, and was so impressed, and frightened at the same time. I live in Scottsdale Az, a long way from Cleveland, and I am 88 years old. I have a surgeon here in Scottsdale who is highly regarded. He has performed hundreds of valve replacements as opposed to 4,000 that Dr. Gillonov has. My son would accompany me if I traveled, but I would then need a 24 hr. Caregiver for my husband, instead of 11 hrs per day.. If I were your mother, or an aunt... don't want to put you on the spot...would you think it wiser for to me to consider being close to home for the surgery? I know it is not fair to ask you that, but you are knowledgeable.

Adam Pick Hi Patricia, I had the Ross Procedure performed on me. So, my aortic valve was replaced with my pulmonary valve. And, my pulmonary valve was replaced with a ... Read more

Adam Pick Hi Patricia, I had the Ross Procedure performed on me. So, my aortic valve was replaced with my pulmonary valve. And, my pulmonary valve was replaced with a human donor valve. It was a little bit of musical chairs going on with my valves which is why the operation is also called the Switch Procedure. If you are interested, here's some good information and an educational video about the Ross Procedure. https://www.heart-valve-surgery.com/ross-procedure-statistics.php

Learn about the Ross Procedure surgery for aortic valve replacement - its success, failure, re-operations rates and leading surgeons.

Patricia Garcia Thanks for the information. My problem valve has been my mitral valve. I had MVP as a child then it was MVP with regurg. repair for that with the Alfieri ... Read more

Patricia Garcia Thanks for the information. My problem valve has been my mitral valve. I had MVP as a child then it was MVP with regurg. repair for that with the Alfieri technique in 2001, but failed in 2006. In 2007 went to CC and had a porcine valve put in and now I have severe mitral stenosis. Tomorrow I will be getting my mechancial valve at Univ. of Penn.

Adam Pick My thoughts are with you Patricia. By the way, who is your surgeon at U Penn?

Hi Adam,
Thanks for intro into Baylor Plano, I have a 'heart clinic' on Tuesday, which at minimum will be a more updated Echo.(last one 4 months ago) Surgery still planned by Dr. Gillinov Feb 5 in Cleveland.

Adam Pick Hey Elaine, Hmmmmm. Have you checked your privacy settings? It sounds like you may have "opted out" from having your posts in the news feed. To have your posts ... Read more

Adam Pick Hey Elaine, Hmmmmm. Have you checked your privacy settings? It sounds like you may have "opted out" from having your posts in the news feed. To have your posts in the news feed, please turn that setting to "Off". Let me know if that helps. Also... Guess where I'll be next week? Yep. I'm coming to Indianapolis to film an educational video with your surgeon, Dr. Gerdisch. Needless to say, I'm really looking forward to this! For the patients in our community, here's a link to help you learn about Dr. Gerdisch. Plus, there's a great video about mitral valve repair at https://www.heart-valve-surgery.com/surgeons/dr-Marc-Gerdisch-Indianapolis-Indiana.php.

See patient reviews, physician biography and videos of Dr. Marc Gerdisch, heart surgeon, with phone number and address in Indianapolis, Indiana.

Elaine Foster Thank you Adam. That was the problem. All fixed. That is exciting to hear about the video you are taping. One thing to keep in mind, since you are a California ... Read more

Elaine Foster Thank you Adam. That was the problem. All fixed. That is exciting to hear about the video you are taping. One thing to keep in mind, since you are a California guy---it's really cold in Indiana right now, so pack plenty of layers! I had an appt with Dr. Gerdisch next week, but they changed it until the following week--hmmm wonder if your video is the reason? Thanks again for this website. God Bless you.

Hi Adam,
Thank you so much for putting together this Site. I live in Dallas area. I am currently scheduled for mitral valve repair Feb 5 in Cleveland with Dr. Gillinov(who I think you have met). In another post you mentioned several great surgeons in the Dallas area. Do you have any thoughts to share on traveling for the surgery, as the nurse in Cleveland advised I am fine as long as I stay for week past surgery as a precaution. I have a local GP and cardiologist, but what is your experience on follow on care in case of complications.(the biggest complication I am hearing is Atrial Fibrillation, which appears very common). Would I just be able to go to Baylor for follow on care if needed in your experience?
Thanks,
Don

Hey Adam, saw where you mentioned your left ventricle had dilated before surgery and was back to normal at 3 years postop. Note that my right ventricle was noted to be "very severely dilated" immediately preop before my tricuspid valve repair at Cleveland Clinic on 11/20/14. After surgery, Dr. Gillinov said the heart muscle looked good and was not scarred (believe he used the phrase "no fibrosis") and expected right ventricle to fully reverse remodel if valve keeps regurgitation low. A question or two:

1. How much dilation did you have?
2. Did it take the full 3 years to return to normal?

Note I also have some mild bradycardia/AV node dissociation that seems to have come on in the last year and I suspect the heart dilation may have disrupted the conduction system of heart. Maybe, with any luck, this will improve with additional reverse remodeling?

Hi Adam, I saw Joey today ~ so nice to see him. ~ Day 2 post op. He walked the floor and shaved. He loved the shave! He is weak and I was only able to see him a moment. Just got a call that they will keep him in icu over night. Monitoring an irregular heart beat. Is this a typical challenge?

tina fluhrer I actually do not know if it is a irregular heart beat.... they said a concern came up on the echocardiogram. They ordered the move out of icu and then moments ... Read more

tina fluhrer I actually do not know if it is a irregular heart beat.... they said a concern came up on the echocardiogram. They ordered the move out of icu and then moments later changed their mind. ~ and just now a call came in as I was typing...........they will try to regulate his heart beat with medication and if that does not work they will need to put in a stint.......whew..................

tina fluhrer I just watched your video on afib...... Good info and timely for me. :)

Hey there! Thanks for everything you do the community! I just joined your site today, but have been reading for about a month. When signing up, I went to edit my story. But, for some reason, I'm unable to save my surgeon's name, hospital, date and story. Any ideas?

Adam Pick Hi Ole, Great to meet you as well. Thanks for the kind words about this project. And, I'm glad you just signed up. Fyi, I just tried this and had no issues ... Read more

Adam Pick Hi Ole, Great to meet you as well. Thanks for the kind words about this project. And, I'm glad you just signed up. Fyi, I just tried this and had no issues making those changes. Are you on a PC or a Mac? What browser are you using? Thanks! We'll figure this out.

Ole Bore PC and IE11. I was able to make the updates using my iPhone 6 and iOS 8.

Adam Pick Thanks. I'll pass this along to our programming team. Sorry for the inconvenience Ole! Glad to see it worked with the iPhone. If you need anything else, please let me know.

Ole Bore Will do! And again, thanks for everything you do for this community.

Joan Napier Adam, I agree with what Tammy said. You, your book and your website have been a godsend during this challenging time of HVS. Thank you for all that you do to ... Read more

Joan Napier Adam, I agree with what Tammy said. You, your book and your website have been a godsend during this challenging time of HVS. Thank you for all that you do to help us and our families. And a very Happy Thanksgiving to you and you family! Joan

Adam Pick Thanks Tammy and Joan!!!! You two just made my day. Thanks so much for the encouraging and inspirational words. Again, many, many, many thanks! Happy Gobble Gobble! Adam

Hello Adam, I met my surgeon for the first time today. He said that he had interacted with you on some things and that he thought your site was excellent. His name is Dr. Jeremy London in Savannah, Georgia. Do you remember him? I hope you and your family are well this almost Thanksgiving season.

Just wanted to let you know I met with Dr. Marc Gerdisch yesterday. He is a very knowledgeable surgeon. As I was leaving his nurse handed me your book! I told her I already have it, and have learned alot, but I took the one she offered to give to a fishing buddy of my husband who had AVS. Thanks again for your work to keep this site up and running. It is such a blessing.

Adam Pick Tom, That was awesome. I'm amazed they were able to achieve an 85% forecast success rate for the test group.
Needless to say, that is very, very, very encouraging ... Read more

Adam Pick Tom, That was awesome. I'm amazed they were able to achieve an 85% forecast success rate for the test group.
Needless to say, that is very, very, very encouraging as a means to prevent unwanted (and potentially tragic) cardiac events.

Thanks for sharing!
Adam

P.S. No need to ever thank me. It's an honor and privilege to be a part of this community.

Adam Pick Hi Renata, Here is some great information about the Ross Procedure that should help you. Fyi, I had the Ross Procedure performed almost 9 years ago. It's not ... Read more

Adam Pick Hi Renata, Here is some great information about the Ross Procedure that should help you. Fyi, I had the Ross Procedure performed almost 9 years ago. It's not for everybody. But, the procedure has been very successful for me and many other patients in our community.

http://www.heart-valve-surgery.com/ross-procedure-statistics.php

You can also type "Ross Procedure" in the search box above to learn more about this unique type of aortic valve replacement.

Adam Pick Joseph, Great question. Fyi, I'm really not one to give medical advice as to what you (or anybody) should or should not do. I can only share that, at times, ... Read more

Adam Pick Joseph, Great question. Fyi, I'm really not one to give medical advice as to what you (or anybody) should or should not do. I can only share that, at times, during the early recovery, some patients overdo it. They want to hurry their recovery. They want to "get back to normal" quickly -- only to feel physically tuckered out the next few days. I was one of those patients. And, I have spoke with many other patients who experienced the same thing. That said, I would (i) contact your medical team to get their opinion and (ii) you might want to take a little easier during these first few weeks. I'm a big fan of 'safe not sorry' if you know what I mean. Whatever you decide, I am so happy to hear about how great you are doing!

Joseph Ballett Thank you Adam this is the second day i have done this , but i think i will slow down a bit , like you said better safe. I have not tired after these walks .

On October 24, 2014...

Adam,

Can you please give me a few names of surgeons from N.Y.that specialize in BAV , and stenosis.. I want a surgeon that takes the most conservative approach . Please help me out.. my family would appreciate your help too! :-) I know LIJ does TAVR...there are other methods.. I want a very conservative surgeon that does the most minimally invasive procedure! Please help!

Adam Pick Hi Kathy, Is the procedure for you? As you can see here, TAVR is typically for inoperable or high risk patients. You can learn more about it at http://www.heart-valve-surgery.com/tavr-procedure.php. ... Read more

Adam Pick Hi Kathy, Is the procedure for you? As you can see here, TAVR is typically for inoperable or high risk patients. You can learn more about it at http://www.heart-valve-surgery.com/tavr-procedure.php. Also, as you mention a BAV, you may want to check this out -- http://www.heart-valve-surgery.com/heart-surgery-blog/2014/01/10/tavr-bicuspid-aortic-valve-gorav-ailawadi-dr/. I hope this helps!

On October 24, 2014...

Geri posted a note for Adam that says:

Dear Adam
Thank you so much for this wonderful heart valve site, it is an inspiration and great help to many of us, sharing of procedures, getting advice, learning of new methods, and especially friendship to those living alone adjusting to this surgery.
I don't know how I would have managed without this great support group
thanks again

Adam Pick Hi Gary, I think our community has learned together that the robot is another tool that some surgeons elect to use to successfully perform mitral valve repair ... Read more

Adam Pick Hi Gary, I think our community has learned together that the robot is another tool that some surgeons elect to use to successfully perform mitral valve repair surgery.

Several of the surgeons that we have come to know over the years -- including Drs. Chitwood, Mihaljevic, Lewis, Guy, Roberts and Trento -- prefer to use the robot. Other surgeons, prefer to use other techniques from full sternotomy to minimally invasive.

At the end of the day, I think it's less about the robot and more about the surgeon and their team. You want to find a surgeon who is very experienced -- for the particular therapy that you need performed.

That said, here are some videos we have filmed over the years that might help you (and others) learn more about robotic mitral valve repair.

Hey Adam, I just checked my emails and found one from Florida Hospital. I can't thank you enough for all of your help! You have made my night!! Just knowing they are aware of my situation and expecting my call is such a comfort. I'm calling them in the morning. Thank you!!!!

Thank you so much Adam for contacting Dr. Accola with my question. I am so hoping to get him for my surgery. I've watched all of your videos with him and read about him in your book. I'm in northwest Florida so he's only 7 hours away. I just hope he can fit me in. My cardiologist says I need to have this done before the end of the year. Thanks again for all you do!

Adam Pick Hi Tammy, So wonderful to hear how the videos and book have helped you. Like you, I'm hopeful that Dr. Accola can get you scheduled. Many patients from our ... Read more

Adam Pick Hi Tammy, So wonderful to hear how the videos and book have helped you. Like you, I'm hopeful that Dr. Accola can get you scheduled. Many patients from our community have had excellent results with Dr. Accola and the Florida Hospital team. If you are interested, here's one of my favorite success stories of Denise Ring.

Hi Adam, I have a question. Do you know how Healthgrades.com gets there rating information? Do hospitals and Drs. pay to get their good ratings? I am wondering if the results are completely trustworthy?

Hi Adam, I just wanted to tell you I don't know how I would be able to get through this if it weren't for your book and this website. Being able to connect with others going through the same thing is such a blessing. I've been thanking God for what you've done here. Thank you, Tammy

Adam Pick Tammy, You just made my day. Thanks so much for the very kind words about this project. It is a complete honor and privilege to be of service to you during ... Read more

Adam Pick Tammy, You just made my day. Thanks so much for the very kind words about this project. It is a complete honor and privilege to be of service to you during this experience. If you need anything, please let me know. :) Adam

Adam, I think I need to be in time out. I did it again, as Brittney Spears would say. I changed my photo for the THIRD time, to the photo of your book. I have no idea how or why this happens , but I think I just click somehow on the picture of the book, and zap it becomes my photo. Is there a way I can stop this from happening? And, can you change it back to the Lucy dog photo for me? I am really sorry, to keep doing the same thing. Eleanor

Adam Pick Thanks for the very kind words Aubrey! Great to hear the book is helping you along this journey!

On October 7, 2014...

Adam, from my readings and such from the website I get the impression that the insurance company determines time of surgery and not the doctor.
This is a generalization but was wondering if there is any truth to this?
Take care.

Adam Pick Hi Robert, You raise an interesting point. In my personal experience... It was my surgeon, Dr. Starnes, who reviewed my echo, met with me, and then recommended ... Read more

Adam Pick Hi Robert, You raise an interesting point. In my personal experience... It was my surgeon, Dr. Starnes, who reviewed my echo, met with me, and then recommended the scheduling of my surgery. Within 15 minutes of of my consult with Dr. Starnes, I was scheduled for surgery.

Now comes the tricky part -- as I understand it. Once the surgery is scheduled, the insurance companies need to authorize and approve the procedure. (I'll never forget when I received a copy of that approval letter from my insurance company in the mail. That was a great moment.)

However, getting that authorization letter is not always so easy. So you know, I went out of my network to have Dr. Starnes perform the surgery. He was a specialist in the Ross Procedure -- which was the type of operation I wanted. Like Janet (who just posted about this), and many others in our community, this can be a very frustrating time, as insurance companies are not always pleasant to deal with. I remember spending over 2 hours on the phone dealing with my insurance company.

I hope this helps answer your question. I'm guessing -- given all of the different plans and providers -- there is a lot of variance in this process. I'd be curious to know what the other members of our community experienced.

Ruth Valenzuela My cardiologist told me the insurance company has their own set of doctors who make decisions on my behalf even though I've never been seen by those doctors. ... Read more

Ruth Valenzuela My cardiologist told me the insurance company has their own set of doctors who make decisions on my behalf even though I've never been seen by those doctors. They denied a scheduled echo for me once because they didn't see the necessity of it even though my cardiologist wanted one done. Nonetheless, I had to wait until they said it was okay.

Tom Elliott I may be among the lucky ones, because my insurance company has been no problem at all, at least not so far. They required a preapproval, but the surgeon's ... Read more

Tom Elliott I may be among the lucky ones, because my insurance company has been no problem at all, at least not so far. They required a preapproval, but the surgeon's office took care of that, and it came in plenty of time, after the surgery was scheduled, if I recall correctly.

But mine was a pretty straightforward situation, with hospital and surgeon both in their network.

Ruth Valenzuela It probably depends on who your insurance company is. I have Healthnet.

Bob O, my insurance won't pay for an "elective" surgery, which is what they consider valve replacement, unless it meets certain criterion. Severe without symptoms, ... Read more

Bob O, my insurance won't pay for an "elective" surgery, which is what they consider valve replacement, unless it meets certain criterion. Severe without symptoms, qualifies, severe with symptoms of course and moderate WITH symptoms. Moderate without symptoms would be a fight. Unless the heart is showing signs of trouble. For example, where I am now. Moderate/Severe. My heart doesn't have any signs of enlargement, high pressure, etc. and my symptoms have not been attributed to my heart just yet. So I would not be able to get the insurance company to pay right now. Now if the doctor said, "it's time and you need the surgery" then the doctor would have to work with the insurance company to make it happen and the doctor would submit the basis of his or her determination. There are many variations and the insurance companies do have a medical review board that assists in the decision. Unfortunately, in my experience, the review board is just looking at a limited set of records. They make a determination based on numbers and ranges on a piece of paper, the results of testing. They don't seem to take into account a patient is a whole person and a patient may have other health issues that play into things. Sometimes it might be in the best interest of patients with secondary conditions to have surgery sooner rather than later because waiting could increase their risk of other complications not related to the heart. The doctors get that, an insurance medical review doesn't seem to get it, the board only wants to hear about the issue being presented, not the patient as a whole. That's not to say all insurance companies operate that way, but that has been my experience. Sorry for the long winded response. :)

Ruth, my cardiologist wanted me to have an echo every 6 months while I was moderate, my insurance company also denied the claim. Now that I am moderate/severe, ... Read more

Ruth, my cardiologist wanted me to have an echo every 6 months while I was moderate, my insurance company also denied the claim. Now that I am moderate/severe, they will "consider" 6 month echos. My cardiologist said he will do them every 6 months regardless because it's necessary and he will just have to fight the insurance company. It's crazy.

Ruth Valenzuela Thanks Karen. I'm at the moderate level and have an echo scheduled for Jan 5th. I have a feeling I'll be at the moderate/severe stage so I'm hoping I'll have ... Read more

Ruth Valenzuela Thanks Karen. I'm at the moderate level and have an echo scheduled for Jan 5th. I have a feeling I'll be at the moderate/severe stage so I'm hoping I'll have the same deal with the insurance company. My last echo, my cardiologist didn't even charge me for it and I was very thankful but I know he can't afford to keep on doing that... He did tell me that the results of my last echo will justify my need for the one scheduled in Jan.

Ruth, the results definitely will determine the justification for the one in January. When I first became moderate the insurance company paid for echos every ... Read more

Ruth, the results definitely will determine the justification for the one in January. When I first became moderate the insurance company paid for echos every six month but only for about 3 echoes and since my results were stable, they said every six months wasn't necessary and then I was scheduled for a year from the last one. My year would have been this past August but in June I had symptoms that needed to be evaluated so the echo was scheduled in June but the insurance company paid for it even though it wasn't a year because there were symptoms. So that seems to be the way it goes. For just monitoring, they want me to wait a year if things are stable. If there's a concern that needs to be checked then they'll approve the echo sooner. But my last echo came back moderate/severe so I think my echo will be approved every 6 months now. By the way Ruth, after my valve became moderate it stayed that way for 3 years before becoming moderate/severe. I've learned so much about how different we all are and how no progression is the same as another. It's amazing how so many of us experience the same condition in so many different ways. I go for my next echo in February so you and I seem to be traveling down the same road. Or at least a similar one.

Ruth Valenzuela Karen, I would love my valve to hold up another 3 years likes yours. I'm actually praying it all goes away but I'll take 3 years. Thanks for all the information ... Read more

Ruth Valenzuela Karen, I would love my valve to hold up another 3 years likes yours. I'm actually praying it all goes away but I'll take 3 years. Thanks for all the information you provided. Yes, it seems we are on the same track..

I know what you mean Ruth. I wish with all of my heart that I could just wake up and it will be cured. I know the reality though and you do too but it feels good to wish. :)

Adam Pick Karen and Ruth, It is awesome to see you guys having an ongoing conversation in this thread! This is exactly why we have been making changes to the site! Love, Adam

On October 6, 2014...

Adam, I just left you a phone message about a problem with the forum. As you will see if you go to Ruth Valenzuela's page, a recent post generated 9 duplicates. However, I received 44 emails telling me that she posted on the site. So those 9 posts generated 44 notifications. Just wanted to let you know that the problem was not only duplicating posts but that it is also affecting the email notifications. Thanks. Karen

Adam Pick Thanks so much Karen for letting me know about this. We are making several changes to the site right now. I think that might be part of the reason the system ... Read more

Adam Pick Thanks so much Karen for letting me know about this. We are making several changes to the site right now. I think that might be part of the reason the system just acted up. I'll look into this. Again, thanks!!!!

You're welcome Adam.

On October 5, 2014...

Hi Adam, thank you for welcoming me and I did have one question; do you know much about repeat valve surgery? I had my mitral valve repaired in 1997, and it is leaking badly again. I do not yet know what will be recommended, I'm waiting for an appointment with a valve specialist. I have not found much information about this. thanks for this great site, my best Kate

Adam Pick Hi Aubrey, I know that many patients from our community have had great surgical results at Duke. However, I have never met any of their surgeons. What is the ... Read more

Adam Pick Hi Aubrey, I know that many patients from our community have had great surgical results at Duke. However, I have never met any of their surgeons. What is the name of the surgeon you are going to at Duke?

I haven't seen a surgeon as of yet. just the cardiac team. I guess the surgeon will be the next person I meet

Adam, I am blessed to be geographically close to UVA, Duke, UNC. Just want to make the right decision as to the best surgical team available.

Adam Pick Gotcha. I'm familiar with the UVA team. Drs. Kron, Kern and Ailawadi have helped out many patients in our community. Again, I don't know too much about Duke ... Read more

Adam Pick Gotcha. I'm familiar with the UVA team. Drs. Kron, Kern and Ailawadi have helped out many patients in our community. Again, I don't know too much about Duke or UNC. I've heard good things about them just never had much (if any) direct contact with them. Sorry I don't have more information for you.

Adam, What an awesome book! Thanks for your efforts to make this journey easier for all.

Adam Pick Aubrey, It is an honor and privilege to be able to help you through this journey. :)

Just purchased your book, looking forward to learning from your experience. Thank you for being sensitive enough to document your experience in the midst of your own life crisis for the sake of helping others, who would need cardiac care as well. Also, It was a pleasure and comfort speaking with you.

Adam Pick Lawrence, Great talking with you just now. My thoughts are with Christopher, you and your entire family. Fyi, I sent Dr. Bolling a note that your family is ... Read more

Adam Pick Lawrence, Great talking with you just now. My thoughts are with Christopher, you and your entire family. Fyi, I sent Dr. Bolling a note that your family is coming to meet with him a the U of M. He responded in one minute that he is ready and waiting to help out. Please keep me updated! Adam

Adam, I am wondering if I may not be doing something correctly. When I click on the heart (top right hand corner of my screen) and I see 3 people sent me a Guest Book note, including yourself :o), in order to reply to them, do I simply "Write a Comment" then click on Post? Will each of the 3 people see my comment? Or do I have to send them a note? I ask because, I replied to them but have not heard back from either of them. Either they had nothing more to say to me, or they didn't see my comment. Please advise.

Adam Pick Hi Lily, When you post a reply to a Guestbook post, that person will receive an email notification that you have responded. For example, you should have received ... Read more

Adam Pick Hi Lily, When you post a reply to a Guestbook post, that person will receive an email notification that you have responded. For example, you should have received an email for this post. Did you? Earlier in the week, we had a few issues with this notification system and we are still working on a few enhancements to improve it. Thanks for your patience. Adam

Adam Pick Hi Ruth, Great question. Unfortunately, I have never spoken with a specific surgeon in Tucson. But, if you search by city in the Surgeon Finder, you will see ... Read more

Adam Pick Hi Ruth, Great question. Unfortunately, I have never spoken with a specific surgeon in Tucson. But, if you search by city in the Surgeon Finder, you will see a few surgeons who have been recommended patients in our community. Try this link - http://www.heart-valve-surgery.com/surgeon-database/surgeonSearchResults.php?type=zip&q=tucson. I hope that helps! Adam

Thank you Adam for the info on login, I will try it, also if one logs in the edit feature is available
I read that you live in Redondo Beach, I was there about five years ago with the son living in L.A. , as I recall many huge birds flew onto the deck to be fed by the tourist, you southern California folks are so close to wonderful beaches, it is amazing
thank you for this wonderful site, helping folks to handle the trauma of open heart surgery
Best Wishes

Adam Pick Hi Geri - Great. Give it a try. And yes, if you are logged in you can edit the comments as well. I've lived in Redondo Beach for about 10 years. It is really ... Read more

Adam Pick Hi Geri - Great. Give it a try. And yes, if you are logged in you can edit the comments as well. I've lived in Redondo Beach for about 10 years. It is really nice. A little overcrowded but my wife an my son enjoy it -- which is the most important thing. Keep on tickin! Adam P.S. Thanks for the kind words about this website. Thanks to people like you and our other members, it is helping patients all over the world. Thanks!

Thanks for updating the website and adding new features Adam. I'm not sure I'm too happy with the new patient community layout. New journal entries get pushed down so quickly as people post that if you don't check here often enough, new entries might not get noticed because they're gone to the bottom so fast. Is there a way to be able to see a bunch of the new entries without having to scroll down the page through all the guest posts, photos, and etc?

Also, a lot of new patients ask all the same questions everybody else has asked previously. I read a lot of past patient journals, so a lot of the questions I had were answered in previous patient journals. I'm not sure the new patients can find the past patient's journals. It might help to have a page that has links to past journals in order of their surgeries newest to oldest. I thought maybe that's what Success Stories was, but when I clicked on it, they weren't journals.

Adam Pick Hi Ernie, Great to hear from you. You raise an excellent point that Terrie, Karen, Ginger and I discussed last week. FYI, check out the new link at the top ... Read more

Adam Pick Hi Ernie, Great to hear from you. You raise an excellent point that Terrie, Karen, Ginger and I discussed last week. FYI, check out the new link at the top of the News Feed which says, "See Newest Journals Posted". When you click on that link you will only see the latest journal postings -- similar to the functioning of the old website. You can then scroll through all the latest journals and you do not have to click page by page by page. The system automatically provides you a chronological listing of all journals. We may change this going forward but many patients are really liking the fact that they are getting access to so much information from the News Feed. I hope that helps! Adam

Ernie Keen I was thinking that it might be nice to have an archive with patients listed chronologically from when they had their surgery. I found out a lot of info by ... Read more

Ernie Keen I was thinking that it might be nice to have an archive with patients listed chronologically from when they had their surgery. I found out a lot of info by reading past journals, and I was especially interested when I found a patient near my age to see what they went through in the surgery and healing process. I used the "Search for a patient" feature (which I don't see anymore) and I would just type in a name like Tom or James or something. I would then read their "My story" and decide if I wanted to read their journal. Just like reading your book, I learned a lot from those past patients. I even found a patient who had passed away after surgery, but then found out she had a lot of other medical issues that lead to the complications that caused her death. And even that was reassuring for me before surgery, because I knew I didn't have those other medical issues that might cause complications. It might be nice to list the patient's location in the archive as well, so patients can see what the previous patients went through to find a surgeon/hospital in their area.

On September 14, 2014...

Adam,

Thank you so much for the ability to edit posts. I just wrote a lengthy one to Jerry Kenney and it was so nice to be able to read through it and edit some grammar errors that would have bothered me if I had to leave them. So glad to see the site features coming together. I create websites so I know it's not easy. So thank you!!!!

Adam Pick Awesome Karen! Fyi, we have been working on several more features that we are getting ready to launch. I'm hopeful these new capabilities will strengthen the ... Read more

Adam Pick Awesome Karen! Fyi, we have been working on several more features that we are getting ready to launch. I'm hopeful these new capabilities will strengthen the learning and the connections among the wonderful patients and caregivers in our community. Stay tuned! Adam

Dear Adam,
I would like to know about the possibility to change my identification to Joaquim by Renata Cimões. If is possible please let me know. This resource is really great, thank you very much. Let me know about your plans to visit Brazil.